A Pop-Up-Shop With Soul

Fifteen months ago an excellent fundraising idea created in the head of my wonderful friend and 'boss' came to fruition: A Vintage Shop themed on the Rat Pack where 100 percent of the proceeds go back to help the homeless. 

We worked for a non-profit organisation that helps the homeless and vulnerable in our community and after many months of planning, securing a venue, receiving and tagging stock donations, shop fit out and volunteer drives, we opened the doors of St Pat's Rack on Melbourne Cup day 2012. 

Yesterday was our very last day of involvement with St Pat's and St Pat's Rack and as a shout out and cheerio,  LG and I decided to spend the day at St Pat's Rack to see old friends, at the same time as raising money and going out on a high note. 

What a day it was; friends we had not managed to catch up with last week at our farewell do showed up at the shop. All the shop's regular clients appeared too as we sat outside drinking coffee, encouraging all passers by to come in and grab a bargain with a feel good factor!  

It really proved to me what a wonderful community building place St Pat's Rack had become in such a short space of time. It has changed the lives of many people and also changed people's perception of the homeless and vulnerable.  

St Pat's Rack was our baby and we felt sad that we would no longer be involved, but immensely proud of all that we had achieved and absolutely delighted that in a year of operations we had raised $30,000 above our costs.  

It is never boring at the Rack.  All walks of life and characters pop their heads in the door, with some of those wonderful people sharing their amazing talents. Yesterday we were graced with the presence and performance of a seriously impressive opera singer from Italy! 

  

LG had the vision, theme and drive to make this Pop-Up-Shop-with-Soul the success it is.  A MASSIVE thank you goes out to her creativity and attention to detail.  Another huge thank you must go out to all the volunteers who worked in the shop, without them there would be no shop and no funds raised. 

Never underestimate the power of a great idea, good intent and positive energy. It changes lives and communities. 

Angels Do Exist

I've met  many beautiful people throughout my life who are now lifelong friends. However, I've only met a couple of people in my life who I know are truly Angels on earth. 

One such person is Amanda.  

Amanda 

I posted a job ad on Perth Gumtree a few years ago now for two after work hours Carers.  One of the lovely people who applied for one of the positions was Amanda.  

The minute I met her I knew I was going to give her the job. It was one of those instantaneous 'click' connections.  Never mind that she had a gorgeous Irish accent (you know us Celts all love each other) but she had worked solely with children with special needs.  It was her passion and I had just struck gold!

Amanda is one of those rare people on our planet whose heart and soul is called to work with children with special needs.  This was absolutely apparent the minute Caragh and Amanda met. Caragh had a huge smile on her face while Amanda chatted away to her just like she would to you or I. The relief and gratitude I felt at finding this angel was almost overwhelming.

It is so important for parents of children with special needs to be able to trust the people that help with the care of their child.  I knew in that first instant that I could trust Amanda with Caragh's life.  I also knew that Amanda completely understood my need for a break and time out.  It was such a relief to talk to someone who absolutely got that Carers need cared for. 

Over the years Amanda has become so much more than the lovely angel that works for me.  She is a true and close friend to both Caragh and I.  She is family.

Amanda and Caragh out for a walk 

Tonight was the last Thursday night Amanda will work for me because she is about to start on a beautiful, very much longed for life back in Ireland with her Man.  I am deeply happy for her that her dreams are coming true - a real fairy tale story!  

I just wanted to pay tribute to the beautiful person she is, to acknowledge the fact that she has blessed both mine and Caragh's lives immensely.  We are going to miss her dearly.  I am completely grateful for all the help, love, friendship and care that she has brought into our home and I wish nothing but the best for her future. 

Mind you, I do KNOW in my heart of hearts this will not be the last we have seen of our wee Irish Angel! If she ever steps foot on Australian soil again my door is wide open to welcome her back. 

Thank you Amanda - you ARE an Angel.    

A Mother Never Forgets

Caragh Lauren Reid 

The first moments of Caragh's life I will never forget.  Seconds after she was born, I looked down and saw a shock of black hair as she was handed to me,wide awake looking up into my eyes. Of course she was the most beautiful baby girl I had ever set eyes on, however, I immediately noticed something different about her.  She was blue from head to toe.  Nothing like when my boys were born with little blue hands and feet that turned pink within a couple of minutes.

As the doctors worked on me I said to them, "she is still blue."  They said give her time, she will pink up.  Another minute or two went by and I said a little more insistently - "she is still blue, is this okay?" The midwife and doctors kept reassuring me that all was well.  The whole time Caragh was looking at me with a really intent stare but still her colour was not changing.  Beginning to feel panic I then yelled, "she is STILL BLUE." The doctors looked up and seeing that she was not pinking up as quickly as they had hoped, blew pure oxygen into her face.  Instantly she turned pink.

Panic over. Time to establish Respiration 5 minutes.

The rest of our hospital stay was uneventful with Caragh doing well feeding and sleeping - albeit her body clock liked to sleep all day and be wakeful during the night.

At 6 weeks old when I went to pick my baby up from her bassinet for a feed, I got the fright of my life because her eyes were bobbing about in the back of her head. I had already noticed that she didn't have good control of her eyes, but put that down to the normal way babies are as they learn to focus. However, again this was different.  I called the doctor immediately, took her for a check up and was told all was okay, nothing untoward going on, no seizures, no temperature and the doc concluded it was just poor eye muscle control.

The next little surprise Caragh had in store for us was when she was 10 -12 weeks old.  Her 'soft spot' or Fontanelle closed over completely.  Now for any of you who know about babies, that soft spot is a very important indicator of baby's health and should not close over totally until the child is at least a year old.  This meant another trip to the doctors with a referral to a paediatrician who thoroughly checked Caragh out.  She was developmentally doing well, again with nothing untoward going on.  They put the closure of her Fontanelle down to 'possibly a familial trait.'

As the weeks changed to months I had a constant feeling of unease about my baby girl.  She was doing things very differently from my three previous babies.  When I held her up taking her out of the bath, her little body would be so 'tight'.  Her head arching back and her toes curling up. If I tried to gently move her head forward to put some clothes on, she had such a tight neck she couldn't easily allow her chin to her chest.  Her sounds were different.  She had a very guttural raspy quality to her baby noises. She was always very engaged with her eyes, looking at you intently, smiling and following you around a room, but if you put a rattle in her hand it was as if she did not know she had arms and hands.  Her movements were jerky.  I would be on the verge of taking her to the doctors because she was not reaching her milestones and then she would achieve the milestone, making me think I was worrying about nothing.

Sleeping Angel at 10 months old

The first Christmas after Caragh was born my parents came to visit us in Australia.  She was 10 months old.  After a few days, Mum and Dad eventually asked me "Karen do you think there is something wrong with Caragh?"  Of course my answer was yes. That was the start of many doctors visits and investigations; Paediatricians, Physiotherapists, OT and Early Intervention therapies were all carried out.  Frustratingly, the doctors could not find anything wrong with her but did realise that she was slightly developmentally delayed, so decided to keep an eye on her.

Caragh sat at 12 months, crawled at 14 months and walked at 16/17 months old.  Delayed, but not too delayed.  All was progressing as smoothly as could be expected until she was 18 months old when I put her down to walk and her right leg flicked up behind her.  At first I thought I had imagined it, however, over the next couple of days this leg 'tick' got worse, then her torso became involved - twisting involuntarily, then her facial muscles joined in the onslaught of uncontrollable movements.

Immediately the Early Intervention physiotherapist arranged for Caragh to see a Paediatric Neurologist as she felt that Caragh was no longer "symmetrical"- meaning that one side of her body was no longer in sync with the other side of her body.  In fact at times it looked as though Caragh had had a stroke.

However, she was happy, well in herself and a delightful natured little thing.  That demeanour is what kept her out of hospital.  Once the Paediatric Neurologist saw her he arranged for her to have a CT Scan after the weekend of our appointment.  He did warn us that if anything at all changed or got worse in the meantime to contact him immediately.

Perfection

Over that weekend things got dramatically worse.  Caragh could no longer walk, her legs kept tripping her up, her torso was twisting and one side of her face was pulling.  When we called the Neurologist, he sounded very concerned and told us to make our way immediately to The Sick Kids in Melbourne. He called ahead to tell them we were on our way.  We had to farm out three little boys and drive the 6 - 8 hour drive to Melbourne.  That trip was done in silence.  All I kept hearing was the Neurologist saying, there has to be some kind of pathology going on there.  i.e. he thought she had a brain tumour.

We arrived at the Sick Kids at 9 p.m. that night where Caragh was promptly admitted to the Neurological Ward and the next day the barrage of tests began.  Lumbar Puncture, Brain Scans, Blood Tests, Physical Examinations.  She became known as 'the little girl with the gait' because of how strange her walk had become.

As she was such a puzzle, she was also quite an attraction and we were asked by the Consultant Neurologist at the time if we minded Caragh being the subject of a meeting of Neurologists and would we be happy to be interviewed/asked questions by a room full of doctors.   Of course we said we would be happy to help as they were all trying to work out what was going on.  All the while Caragh was still smiling and happy!!

After a week in hospital they thought Caragh had the rare Neurological Disorder called Segawa's Syndrome.  However people with Segawa's Syndrome do not have intellectual delay or disability.  Her physical symptoms of the uncontrollable Dystonia were the deciding factor of this diagnosis and so they started her on a drug regime that had never been tried on such a young child.  In fact she was the only child in Australia on the drug L-Dopa at that time.  We had to increase Caragh's dosage daily until the Dystonia disappeared and then reduce it again to see if her symptoms remained alleviated.  We also had to film her progress daily with each increase of the dose and send it to the Professor and all his Neurologist buddies.  They were making a documentary about her.  It was a miracle drug.  Her symptoms disappeared, but unfortunately two weeks after coming off the L-Dopa the Dystonia returned with vengeance - now her whole body was affected. So, back to the drawing board we go and back on the drug.  Caragh remained on L-Dopa until she was 14 years old.

Christmas Morning with her brothers - 22 months old

Over the years Caragh's disability became more apparent but thankfully the Dystonia settled down.  It took me a long time to get over not having an official diagnosis for her.  I felt that if there was at least a name for this thing I could cope better and would have something to work with.  The Segawa's Syndrome diagnosis was ditched as her intellectual problems became more apparent. Caragh presents closest to that of children with Angelman's Syndrome except she is not completely intellectually disabled, so I stick with that because the profile of a child with Angelman's is 99 % my angel Caragh.

Caragh on dress up day at school in Doha with the wonderful Ms Margie

Whenever Caragh's birthday comes around it brings back a lot of memories of the intense period of Dystonia, Doctors and Diagnoses that are etched in my memory as if they happened yesterday and not 23 years ago.

I can honestly say Caragh is the most beautiful gift I have ever been given, the hardest challenge I've had to face and the biggest lesson I have had to learn.  I love her more than words can express and I am very very grateful to her for teaching me absolute unconditional love and acceptance.  It doesn't get any better than that let me tell you.

Happy Birthday Caragh my angel xxx